Taber Peter, Baysinger Jennifer, Daniels Sierra, Diaz-Kincaid Natalie, Gaviglio Amy, Ginter Jacob, Held Patrice K, Reeves Emily, Sack Virginia, Weaver Jennifer, Eilbeck Karen
Department of Biomedical Informatics, University of Utah, Salt Lake City, UT 84115, USA.
Oklahoma Department of Health, Oklahoma City, OK 73102, USA.
Int J Neonatal Screen. 2025 May 20;11(2):40. doi: 10.3390/ijns11020040.
Communication of newborn screening (NBS) results often fails to provide clear explanations of NBS screen results to parents. Understanding existing NBS workflows is vital for improving NBS follow-up. We sought to describe a diverse range of state NBS programs as a starting point for designing tools to improve NBS follow-up, using the example of hemoglobinopathy traits. At a workshop of the 2023 Association of Public Health Laboratories NBS Symposium, participants filled out a survey and modeled their state workflows. Salient features were extracted and synthesized by state. A subset of models was member checked. Representatives from 19 U.S. states participated in the workflow analysis. Mail was overwhelmingly relied upon to convey the results. NBS programs differed by point of first contact with parents and degree of reliance on third parties. A participatory approach is useful for the rapid preliminary documentation of existing NBS program diversity and opportunities and challenges to improve patient education and follow-up. Future work should broaden the analysis to additional entities or individuals, particularly parents and caregivers.
新生儿筛查（NBS）结果的传达往往未能向家长清晰解释NBS筛查结果。了解现有的NBS工作流程对于改善NBS后续跟进至关重要。我们试图以血红蛋白病特征为例，描述各种不同的州NBS项目，作为设计改善NBS后续跟进工具的起点。在2023年公共卫生实验室协会NBS研讨会上，参与者填写了一份调查问卷并对其所在州的工作流程进行建模。突出特征按州进行提取和综合。对一部分模型进行了成员核实。来自美国19个州的代表参与了工作流程分析。结果传达绝大多数依赖邮件。NBS项目在与家长的首次接触点以及对第三方的依赖程度上存在差异。参与式方法有助于快速初步记录现有NBS项目的多样性以及改善患者教育和后续跟进的机遇与挑战。未来的工作应将分析范围扩大到其他实体或个人，尤其是家长和护理人员。
